Health Rising continues its series of blogs on basic aspects of fibromyalgia with a look at which kinds of doctors help and don’t help. From general practitioners to physiatrists (pain specialists) people with FM see a wide variety of practitioners who range from the wholly uninformed to the supremely informed.
Of course, you can’t judge a doctor’s competence until you see her/him. One general practitioner might be great while another is totally uninformed. The question this survey is trying to answer is whether you have a better chance with some types of practitioners than others.
Theoretically FM specialists, rheumatologists and pain doctors should help more but do they? Pain clinics which offer multidimensional treatment plans would seem to be the best option for this puzzling disease, but are they? Let’s find how what gives in this very heterogenous field.
If you have fibromyalgia or a combination of fibromyalgia/chronic fatigue syndrome please take the survey below and let us know your experiences with different types of practitioners.
(Unfortunately, only the results of the questions that used polls are shown immediately. I will report on the survey results later.)
Finding someone to prescribe Low Dose Naltrexone was discouraging, but with time I found 2 who would prescribe it in my Nebraska area. It has been a major positive step, and with supplements I feel better than I have in almost 20 years!
Can you share what they are? God Bless.
I started LDN in November of 2016. I’m off all other meds, except Synthroid. I still need to pace, still have down times when I overdo– but am happy to report; I’m experiencing a better quality of life than I have in fifteen years.
I’m also happy you’re finding help with the LDN.
I am newly diagnosed with fibromyalgia and have been trying to educate myself and try different ways to help have a life. Especially since fibromyalgia doctors don’t seem to want to help manage the pain. Doctors just seem to go through a practiced speech since they know fibromyalgia suffers have to live with the pain because there is no cure. Also, if the patient doesn’t follow their list of medicines….. they usually say they cannot help. And the patient is paying them for what?
What is Naltrexone?
Low dose naltrexone. Several studies have found it helpful in FM. You can find more about it here – https://www.healthrising.org/treating-chronic-fatigue-syndrome-mecfs/drugs-for-chronic-fatigue-syndrome-mecfs-treatment/low-dose-naltrexone-ldn-fibromyalgia-chronic-fatigue-syndrom/
I wish the survey had a space for comments. The physical therapists I had were extremely helpful yet they exclusively practiced myofascial release, along with instruction for home self-care. I wouldn’t recommend a ‘standard’ PT, I don’t think that would be that helpful, yet the ones I was fortunate to be directed to treated ‘outside the box’than what one would typically encounter.
Thanks for commenting here.
I can’t get the little arrows at the bottom to move. Interesting survey.
I would add to the last statement ” I’ve largely given up because I’ve tried every treatment in every available modality and they didn’t work.”
Don’t know what’s going on with the arrows but I will add that statement. Thanks for the idea.
I had to find my own pain relief Kratom I buy from greenleafkratom.com , they have a RED RELIEF BLEND , if your not working its not cheap I think I spend about $60.00 a month but I don’t have to take it all the time I take 5 of the capsules and im good to go for the majority of the day there are other strains and blends they have a chart that will tell you what number pain relief each one is . You need to read about it , research it , the FDA wants it banned , but I will tell you its the best deal in town . There are other sites that sell it I ordered the first time from four different companies and I have founf that where i get it now is consistant and good quality , i have ordered the powder and I buy tea bags and use about a little more than a table soon and you seal the end with an iron .I hope this helps some folks because finding Drs that even know anything about fibro, most still believe its in our heads is a daunting task , do the typical diet CLEAN FOOD stay away from anything processed , gluten free , sugar substitutes ans white sugar , go for the honey or maple syrup . And light exersize . I hope this helps someone , we can’t depend on the Dr.s peace to all . Heidi
Go to the osteopath. Choose the one with the 5-year education. They work with the soft tissue, including internal organs.
Helps me a lot.
The physical therapists I went to were great for specific areas, like if my neck was specifically sore. It helped how I felt overall, even if the specific problem was/wasn’t caused by the fibro.
Kathy – Like you, I had Myofascial Release (John Barnes Technique- “JB-MFR”) by an Expert JB Therapist/OT for 2 months, it was highly successful until she had to leave town. She taught me strategies and techniques for self-care and coping with high stress situations until I could find another body work therapist.
Then I found a gifted massage therapist that did a very similar treatment, CORE Myofascial Release (designed for the English olympic team), plus Cranio-Sacral, and other modalities added for an overall integrative 90 minute session, twice weekly for a few months, then once every 5 days, and so on working out to every other week to every third week for nearly 7 years. It was very expensive but literally gave my life back for many years.
I was practically free of FM pain and only went in for occasional adjustments of anatomic problem areas like “short-leg”, arthritic spine, and hip pain from malalignment after that. Virtually no massage was done, though my CFID doctor of 23 years poked fun of the process continually–probably because his vast arsenal of drugs did very little for FM pain overall. He continued to push Tramadol though I told him Ibuprofen worked better (and I didn’t like the way I felt with occasional Tramadol use.). Now I’ve discovered it’s a Black Box drug, and should never have been pushed with SSRI’s. in fact, that’s an extremely dangerous combo.
I had maintained that mostly pain free state for 7-8 years until spinal arthritic changes & significant life changes have caused FM and general pain to return. In my opinion (after 35-40 years of FM/CFS/ME), copious amounts of regular rest, stretching, self MFR, therapist led JB-MFR and Never pushing the envelope for any reason are keys to keeping FM in check–not drugs.
The Internal Medicine/CFS/ME/FM specialist quit being proactive and for a long time convinced me that I had to remain on his “drug-mix”–sadly that proved to be neurologically very damaging. As I became worse overall due to age and worsening of ME like symptoms (cytokine floods) and underlying infections that he dismissed as “in my head”. After 23 years he told me he was overwhelmed by my worsening symptoms rather than working on infections, etc. I was put out because I had paid him OOP for his expertise which turned out to be just more and more drugs but no new knowledge.
It’s most frustrating that he didn’t R/O Lyme & it Co-infections (Babs, Bart, RMSF, etc), EBV, Heavy Metals (I have a mouth full of Amalgams and possibly infected Root Canal (cavitations) as knowledge of these possible causes for CFS/ME/FM/MS have emerged. It’s so important for these to be r/o before giving up or being drugged unnecessarily for years. It only leads to damaged neurologicals or perhaps other organs.
I found that older GP’s were patronising and dismissive. I found, by accident, a young GP with some sound knowledge of Fibromyalgia… When she asked me to read the info with her, I cried with the relief that came with being believed.
I’ve opted to go down a non medicated route.
Over ten years to find a doctor whom listens and cares. Put me on antibiotics. Three months now. I can now walk more and far less all over pain.
Pain in specific areas that remains is untreated still at high levels for now.
I have been to many doctors over many years and I have found it really is the kind of doctor rather than the type of doctor. I do best with doctors who are good listeners, validate what I tell them, and have open, curious minds and are willing to investigate, think outside of the box and further educate themselves on my conditions. I also highly value compassion and concern.
I also appreciate doctors who don’t ‘dumb down’ the discussions I have with them, and who treat me as a partner in treatment, rather than talking to me in a paternalistic manner as someone who ‘knows better.’ And I especially appreciate doctors who divulge the reasoning behind their medical suggestions/decisions including the pros and cons of each treatment–in other words, be truthful. And if they don’t know, then they should say so!
I couldn’t agree more! Well said.
Nancy, Well-stated and I completely agree.
Such a well-written comment. You spoke my heart.
Couldn’t agree more Nancy.
Here in the UK, the NHS system as a whole really isn’t geared up towards treating Fibromyalgia (or ME) as anything other than psychosomatic/false illness beliefs.
So getting any kind of understanding really does depend on finding an empathetic GP in the first place. But then it’s still the devils own job getting any real treatment because no matter what the individual GP thinks, the system largely doesn’t provide anything to help other than painkillers and CBT. You’re very lucky here if you get offered anything else under the NHS.
And more than that the treatment at the pain clinics here (ie CBT) tends to be psychiatric based on false illness beliefs rather than the helpful sort of CBT that just helps you to accept living with any chronic illness.
I specifically told the pain psychiatrist that I wanted the referral to the pain consultant in the first place to get some practical physical help with my condition, not mind treatment. All she said was thank you for your honesty and signed me back to my GP.
I am seeing a chiropractor who specializes in nutrition and a technique called “spiraling”. The difference in my pain level is amazing! I have had fm for 17 years and been “practiced” on for the majority of the time. What puzzles me is that every Dr. Had a different theory on what fm is! I was on heavy doses of Percocet plus fentynl patches. My quality of life was terrible! After 15 years of medication, I was sent to a pain clinic for “pain management” I realized that their primary goal was to get me off of the drugs no matter what. I eventually listened to my doctor because he really seemed to care. It was the best thing I could have done! My pain reduced by 50%! I had a personality again that was not altered by drugs! Now I am going a more natural route and I cannot recommend a naturopathic chiropractor who specializes in fibromyalgia enough!
Congrats Tami! Is spiraling part of the physical manipulations he or she does? It sounds kind of like massage?
I have had this diagnosed since 1991 and I have been frustrated over and over again by all kinds of Doctors who seemed to know little or nothing about it or considered not real and it was all in my head. Only within the last four years have I started to notice more understanding but still a lack of knowledge about what works. I have recently been going to a pain clinic with physicians and physical therapist under one roof. More has been done for me in a few months than all the years I have had to deal with this. I also started having neuropathy problems in my feet with extreme pain and they have helped me with that. Mental health left me feeling more frustrated than helped.
Glad to hear you got to a Pain clinic and that it helped James. I’ll be highlighting how to find some in the followup blog
James, Could you please share what has helped with the the neuropathy problems? I have had that since 2013. It began in my feet, now progressed all over. The one time it began to abate was with a course of 1,000 mg bid of Cephalexin for 10-12 days for bad sinusitis and kidney infection. In fact, all my host of symptoms began to very gradually get better finally (after 2 years of low grade infections persisting). I needed to continue but the doctor would not give me another round. Now I’ve learned of so many people that are being helped with long-term ABX (like I tried to discuss with my CFS/ME specialist to no avail).
I might add here a warning for everyone–do not allow Fluroquinolones–Cipro, LEVAQUIN, Avelox (many more) to be prescribed except as a last resort. Triple that warning for IV Levaquin (or generic floxes) which they use at most hospitals w/o consent as a first choice to treat Pneumonia and other URI’s, kidney or UTI’s.
Levaquin is Black Boxed and should probably be taken of the market except as drug of last resort. But for those of us with muscular pain or weakness and FM, it is even more dangerous. They wouldn’t listen to my complaints about round 1 of Levaquin and threatened to code me as “non-compliant” (which would go into the MIB (MIB Group, Inc. or MIB–formerly the Medical Information Bureau) if I wouldn’t take the 2nd round. This could affect a person’s future insurability and no one knows about this bureau nor how to get bad info removed. Levaquin round 2 flattened me out with extreme muscle and bone pain plus complete weakness (prostration). I was alone, out of state, and couldn’t walk more than 3 steps for 4 days. After that episode in 2009, my ankles became weaker, I was intermittently shakey and disoriented but never linked it to latent effects of being “floxed” until lawsuits began making headlines in 2012. It also causes severe peripheral neuopathy but doesn’t always present for months so it’s hard to sue.
Actually, I feel lucky after chatting with relatives or reading online about over 75 deaths (age 23 to 60-something) of otherwise healthy people from mostly IV Levaquin during hospitalizations, but also from oral Cipro and Levaquin on one forum alone (in addition to 100’s of injuries). Even with both drugs listed on my severe reaction list, my now ‘former’ urologist still insisted on making me choose between Cipro or Levaquin for prophylactic ABX, so I had to cancel the procedure. I find this very frightening and have lost respect all but a few doctors.
I have largely given up. I have been dismissed from 5 doctors because I either don’t fit into their “criteria” or they can’t do anything else because I have tried all suggestions/medications without any good results. Rheumatologist I saw Friday said I don’t need to come back as there’s nothing he can do! Very frustrating! As I don’t work, I don’t have money for medical marijuana or any other treatment that’s too expensive.
I’ve been going to the same doctor, a rheumatologist for at least 15 yrs and she has helped me very much. I’m also being treated for RA and food allergies. She wants me to try ldn as soon as I finish with methadone. I’m also trying to get off lyrica which has turned into a nightmare.
It sounds like you’re seeing an enlightened rheumatologist. Good luck with the LDN and don’t forget about medical marijuana if you can get it.
What is LDN (idn)? I have had the best luck with and older “concierge” internal medicine physician who now has retired. The new doctor just follows my retired physician care plan and prescribes the same medications.
Low dose naltrexone. A compounded drug that can be got cheaply with a doctor’s prescription. Check out the Low Dose Naltrexone page on Health Rising and good luck!
Great Questionnaire and I look forward to seeing the results. Would you be interesting in publishing the findings in a rheumatology journal?
If they would have them I would. 🙂
Let us dialogue about this. Please send me an email to discuss.
I would be reasonably confident that the results would be accepted for a poster presentation at the annual American or Australian rheumatology Association meetings. Regards
I am sifting through the uk nhs system hoping to find the right place to be. Problem is the medics don’t coordinate or talk to each other on the whole, so I end up with many diagnosis but no coordinated plan of care.
I’m in Scotland, Uk. For about 5 years I struggled on just seeing my local GP’s, who prescribed pain killers but generally implied that my issues were all in my head. I was sent to counselling 3 times, which was somewhat helpful mentally but not physically. I was given acupuncture a couple of times, which actually helped my neck and shoulders a little, but wore off within 2 days each time. As time went on I gave up on GP’s and started to do my own research to find out what the hell I had. I quickly realised I had fibro, and went back to my GP at the time. His reaction was somewhere between ‘Fibro isn’t real’ and ‘you’re obviously a hypochondriac if you’re looking symptoms up on the internet.’ Eventually I had a massive meltdown at the Doctors and my GP agreed to send me to a Rheumatologist. Ten minutes in to my Rheumatology appointment, he said ‘You’re right, you have textbook Fibromyalgia.’So I got my diagnosis. Unfortunately, the Rheumatologist will not see me again as ‘there’s nothing they can do for it’. Since then I have tried various GP’s, some more useful than others, but Im basically surviving on opioids, valium and sleeping pills. Apparently, a diagnosis is pretty much the end of the journey around here. I’d be interested to know if others in the UK have managed to find any substantial help?
That’s brings up another survey possibility – a survey by country looking at satisfaction levels and treatments offered. Thanks for the idea 🙂
That would be a great survey. In the UK you fight for diagnosis, feel relieved when the Rheumatologist gives you a diagnosis and then they say sorry there’s nothing we can do, you are discharged with a leaflet. A leaflet, for a life long debilitating illness, what a joke!
The UK is certainly not doing well on Fibro. I didn’t even get the leaflet! There are apparently some specific Fibro clinics in Scotland, one that I know about anyway, but it’s about 40 miles away, which is somewhat too far for regular appointments. I did have a lovely ‘alternative health friendly’ Gp for a while, who told me about the clinic, and tried hard to help, but unfortunately he moved away, so I’m back to square one. Country satisfaction survey sounds like an interesting idea.
Pretty much the same for me Emma. I’m in Gloucestershire, England.
I have ME, Fibro, RLS and now FND (and other things) and it took me around 15 years just to find a GP that would listen. She is very empathetic and understanding by absolutely hamstrung by the rubbish that is on offer from the NHS for these conditions.
It’s her that has referred me to the various consultants for diagnosis. She diagnosed ME first, confirmed by ME clinic. She diagnosed Fibro herself. She referred me to the pain clinc who suggested amendments to my painkillers then referred me to the pain psychiatrist who offered guess what, CBT. Then due to my twitches, spasms and jerks my GP referred me to a neurologist who even before doing the EEG diagnosed what he called Functional Movement Disorder.
Each and every consultant I have seen has basically confirmed a diagnosis and signed me straight back to my GP with absolutely no further useful treatment whatsoever. Despite me specifically saying I was hoping for some physical treatment for a physical condition.
So no, my story isn’t any better than yours regards treatment in the UK.
CBT does seem to be a favourite in the UK. If only positivity training could cure physical/neurological issues eh? We’d all be fine 🙂
CBT has been the go-to in the U.S. too! I’ve had ME/CFS/FM for 30 years, the only help for me has been a great Internal Medicine/Primary Care physician who is willing to learn as we go, and a great Chiropractor with the same open mind. They weren’t taught a thing in medical school about these conditions, but have been a huge help learning with me what works, what doesn’t work, and when to say “I don’t know”! I have a full massage every other week that has really been a miracle in reducing muscle tension, spasms and pain. So far my insurance company has covered most everything, in this respect I am lucky and grateful! 🙂
I took my cousin to the Emergency room for his post surgery, and ongoing chronic pain last fall. His Dr. had cut him off pain medication cold turkey and was going through terrible withdrawals. Their only response was go to a pain management clinic because G.E.T. and C.B.T. were the only thing that will help! What a crock, and a wast of time, money and effort. I really hope all these Doctors that believe that will know the pain that they put him through, it was horrible! Thanks for listening to my rant ?
Here’s hoping we all have better days ahead.
I’m trying to help a friend who has severe widespread fibro. He’s in Gloucester. Would you share your go details with me so he can try to see her privately please? His gp is being difficult about signing a disclaimer for HBOT treatment at M&S oxygen therapy centre. I would be eternally grateful. He’s at his whits end.
Would you share your GP details pls. I have posted but it didn’t link my reply to this post. Thank you in advance
Hi Emma, I also live in Scotland and my story is quite similar to yourself. I had a gastroenterologist put his hands on the back of his head, swing on his chair, then tell me I was just neurotic ,because I had Candidiasis in my gut for many years and the pain was unbearable. He then informed my gp I needed counselling. It just sole destroying trying to be listened to. I’m on the Fentenal patches and couldn’t be without them. They deninatly help a little bit. Good luck in your struggle, and we can definitely see we are not alone from reading this.
Sorry to hear about that Gisele…to think that came from a gastro.
I feel your pain Gisele! Literally, as well as metaphorically 😀
UK GP’s have so many ‘useful’ suggestions for fibro, don’t they… ‘Try to reduce the amount of stress in your life’ is my favourite. Erm, how? Oh wait, I know, I’ll stop poking myself in the eye after meals! Thanks Doc 🙂
What about MCTD (mixed connective tissue disease) used to be collagen vascular disease. There are many ways to check for it but one that is not used very often is
ANCA and P-ANCA, Atypical P-ANCA. This disease shows up at different times affecting different organ’s/tissues of the body. That is how the Rheumatologist
and Internal Medicine physician (both astute & compassionate) found what was
going on. Many years of steroids and finally better forms of treatment ie:
Lupus and RA drugs were the most helpful. Low dose oral pills Cellcept for 3.5 years, then Rituximab IV monthly for 1 year then monthly Simpioni injection for last few years (this was the best durg) which helped the pain and leveled out much of the symptoms. Natrexone low dose for 3 years also a big plus. I am severly allergic to Levaquin and sufferered the same symptoms Lynn Z mentioned earlier comment…..but just didnt’ know what was happening to me at the time.
I’m in Ireland. A couple of thoughts about the survey in general.
1. We all have different versions of fibro – anxiety is my biggest problem, followed by fatigue and then pain. I was in remission for 3-4 years but it’s back now. So my choice of doctor will be based on that.
2. Because I’m in the Irish healthcare system I have to pay to see a GP but further care is free. Neither of my GPs are interested enough to refer me onwards so I’ve had to pay to see other doctors, which includes travel costs because I don’t live in a city. I have to pay the full cost of drugs up to a set amount each month, but duloxetine is now out of licence so much cheaper than the first time I took it.
So comparing like with like based on our symptoms and healthcare options is going to be difficult. But VERY happy to take part and interested to see the results!
Yes, It is a very heterogeneous conditions I agree. Hopefully someday we have diagnostic biomarkers for different kinds of FM. Thanks for taking part in the survey 🙂
Interesting survey. There was not an area to add a comment, so I’m adding here. I’ve been to two (2) different pain clinics that are run by anesthesiologists (the new and growing trend now), and both so far have been the worst doctors/clinics I have been to. It’s like a cattle call in their office. All they want to do is sell you their extra services, and if you don’t agree to it, they get mad. Then, they see you only one time for an initial “diagnosis” and then stick you with an UNKNOWLEDGEABLE PA. Oh, and the wait time is always at least an hour. And forget about their bedside manner. I believe these doctors found a way to pad their pockets and don’t care about the patient. Just my opinion and experience. I’m still looking for someone who truly understands FM, and is not in the business of making a buck.
I have diagnoses of Fibromyagia, EDS, and had an official ME/Chronic Fatigue diagnosis. I was first diagnosed in the late 1980’s with Fibro, Me /Chronic Fatigue in early 1990’s, EDS in 2015( age 66).
In 1982 I was desperate for help and someone who would believe my symptoms. I had 2 young children , working as a pediatric nurse, and could barely get out of bed due to overwhelming pain, insomnia, and profound fatigue. My regular doctors were sure that it was depression. One day with my two children in tow, I showed up at the office of an Internal Medicine doc who I knew as a family friend. After the mostly negative tests came back, he very gently and kindly told me he did not know what was wrong with me, but he believed my symptoms were real. He then gave me the diagnosis of Islander’s Disease. A close physician friend of his had traveled to Sweden or Denmark ? Desperate to understand what was happening in his body, he eventually received this diagnosis which was poorly understood. I cried in his office because he was the first person to offer support. I left with no treatment or plan accept for some supportive suggestions. It was the last time for a long time that I was believed. I believe this to be Fibro and ME and EDS combined. One physician removed the Chronic fatigue diagnosis saying it was not a real disease. I gave up for a long time on getting
any real help.
I am now seeing a Physiatrist , an amazing and kind Internist who has never doubted my symptoms and encouraged my seeing a geneticist. I am now 68 and I am limited physically and unable to do many loved activities. But I am fortunate all the same, As I can walk most days and use creativity to keep myself experiencing joy and peace of mind. I will say that I think adding meditation practice has been extremely helpful. I cannot exercise without triggering exhaustion and pain. I still try to do 15- 25 min of warm water gentle exercises 2-3 weekly. After 9 months last year , this was still my max tolerance. I have written far too much, but am grateful for a chance to share with others who understand. Thank you for you ongoing blog. It is a source of hope and the most up to date information. Joyce
I was so lucky. I found Dr. Manuel Martínez-Lavin so soon. After the first medical visit with an ortophedist. He sent me with a neurologist and then he gave me the contact with Dr. Martínez-Lavín. I have been very happy since then. I appreciate you ask this in this poll. It is very necesary. Thank you so much!
Dr. Martinez-Lavin is great! Thanks for passing that on. 🙂
By the way… the doctors I’m talking about are in Mexico. I live in Mexico. Unfortunately we don’t have enough information because the Mexican Medical System doesn’t recognize FM as an cronical illness yet.
I was diagnosed around 2003 at the fibromyalgia clinic at Oregon health and science university. They were great at that time, but I couldn’t afford to go back to them because of lack of insurance. My primary dr didn’t want to work with them in the first place, so wouldn’t follow any of their suggestions. I have been to different drs all over this country, right now I’m seeing an internist that listens. I’ve tried everything but cymbals, right now I’m on valtrex and Celebrex. It actually seems to be helping.
I have been to so many rheumatologists, they have no idea how to treat fibro, but somehow they are the go to doctors. I had the head director at a Medical school, tell me “here are some painkillers and now go exercise more” he had an intern with him and I felt so humiliated. So angry!!!! I gave up on them as a whole. They want to do their blood tests and then tell you there is nothing wrong with you. I’m an avid reader of this website and waiting for new treatments. I have heard of a family doc in Tennessee who is prescribing alzheimer medications with success. I have basically given up.
This is a little thing but I’ve been communicating with someone who tried the Bed of Nails and he says its been better than anything else he’s tried! https://www.healthrising.org/forums/resources/a-bed-of-nails-for-better-sleep-acupressure-mats-fibromyalgia-and-chronic-fatigue-syndrome.414/
I should probably publish this on the forum, maybe will also. I suspect you have all seen this.
I paid eight bucks and bought the full research study from Pain. You would not believe how smart these guys are and how comprehensive their study was. They thought out every possibility, sacrificed rats, analyzed proteomics me genes, amazing. Of course, I am going to hack this at home, ordered the identical 525 mm green light array they mentioned in article and will set it up like older lady in video described. Cross your fingers for treatment number 112
I was inspired to try this “bed of nails” from an earlier article. I must say, I’ve been pleasantly surprised at the results. I fall asleep on it every night almost. It really does relieve the tension in my back and shoulders and makes a difference in less stiffness the following day. Try it!
It took me about 30 years to find a doctor who not only believed FM was a real thing, but had some experience treating it and could help me manage the worst parts. A big part of my issues was treated with an nsaid called vimovo—even though it is said that inflammation is not a part of FM–I so disagree! You may not be able to find the way to measure it–but people with FM will tell you that they can feel it. I also received injections with steroids, gabapentin for a while then Lyrica. I’m not so sure about Lyrica. I have not tried opioids I think at nearly 60 they will probably be in my future but no rush. I actually feel rheumatologists are the most smug people I’ve ever met, almost shared with a particularly bad pair of GP’s and a neuro I have to see for seizures–does not believe in FM.
Thanks Mary. Is there anything that makes this NSAID different from other ones? Had you tried other ones?
I have been to more Doctor’said and Specialist then I can count.
I started with aching calf’so daily, and numb, tingling fingers
About 6 months after the initial symptoms. I had a mild concussion, severe whiplash in 2005. Right after a camping trip deep in the woods in N.H.
So my doctor’said knew about the accident symptoms. But the rest they tried over & over again to put a diagnosis of Lyme desease.
Because of the camping trip. They were very disappointed that it wasn’t because they didn’t know much about Chronic fatigue or fibromyalgia, They did diagnosis me with Peri neuropathy desease, and MRI’so showed multi level stenosis of cervical, fused vertebrae at one level thoracic, and Degeneratell Disc desease of lumber, neck did press on nerves, so that could all explain pain symptoms. But they didn’t know. I went to a fibro/ chronic fatigue specialists who did the pressure point test and diagnosed me with chronic fatigue and fibromyalgia, he noted to me but not to my doctors that my calfskin and feet were deformed. Which surprised me, but nothing was said again, until 1 year later when my feet had been swelling and cramping up daily, making it hard to walk, than I was sent to a foot surgern who told me I had Cmt, Charlotte Marie tooth desease, the most common nerve desease to be inherited.
Approximately 1 in 2500, both feet operated on. Pain reduced waist down immediately. Yet when I went to my doctor they new about the surgery but nothing about CMT? and at this point they just wanted to stick with fibro pain diagnosis? When I mentioned my neck pain still keeping me awake at night, causing me insomnia, that I have to this day, my dr. Said to me Rita we all have pain, right now my own neck is killing me, YOU need to go home and grieve for your old self, and learn to accept who you are now. I left mortified and in tears, I gave up looking for answers and didn’t go to a family Dr. For 5 years. I lost all hope. Then I read about people with fibromyalgia having low growth hormone, I found a hormone doctor who took my insurance and come to find out. I have hypo pituitary desease? 3-4 low hormones. The question is because no one ever checked my hormones after the car accident is
This concussion along with whiplash and Cmt that causes my symptoms all along? Or is it a combined diagnosis? Because it’s hard finding any Dr in RI that takes my insurance and could distinguish between the diagnosis’es and treat them.
I can’t find a neurological doctor for the CMT, or a hormone specialist to treat my hormones on my insurance, I was paying 80.00 a month cash previously for bioethics hormones but I can’t afford the shots.
My point sorry for getting offrom topic, is it seems degrading that no one cares, not the dr’so I was seeing. Or my medical insurance- I asked them for a social worker. She called we spoke about my problems and she said ‘ we believe the best way to help someone is to help them help their selves?
Again the discrimination against us disabled fibromyalgia people.
We are seen as lazy, medication seeking, depressed adults.
Instead of the incredibly strong individuals that we are.
Until they open a fibromyalgia/Chronic fatigue hospital or clinic in every state we will never be taken 100% seriously.
We Need to format a petition to the medical, drug companies, etc. To Take Us Seriously!! And treat us with respect!! Those 2 things and I would of never went 5 years without seeing a doctor…..Rita
i just want to say I’m so glad I read this, I’ve had fibro for 17years but I think I’ve had it since I was kid,I’m 48 now, I agree with so much that you all have said about the doctors (I live in England) just to get one that believes you is such a relief. I suffer from all the what you could say normal symptoms pain fatigue head pain has been a real problem for me for the years but has gradually got worse over he years, I’m going to see a new neuro on Wednesday and instead of been excited for some answers the first thing does he believe in fibro,I’m a great believer in faith and I think I was meant to read this tonight as I won’t be walking in there all airy fairy,thank you for all the comments.
I didn’t listen to my family when I had alot of pain at the time which was 2000. I have 2 siblings with this disease. Thought it was from working alot n caring for my cancer partner which is my husband the love of my life.
In 2010 the pain got so bad n then I saw an ra doctor n I was diagnosed with fribomyalgia. I have always worked hard n planned to retire in my 60’s so I eventually had to retire due to the pain n I worked in the the deli dept. servicing people for their food needs n I could no longer keep up with the demands of the job
was tough n at times I couldn’t even dress or bath mysef without help. My best friend was also diagnosed with this disease n now we share notes n help each other. I also share notes with my family n friends who have this disease. There is also a support group where I live n there are alot of people who have this disease
have a family physician who cares for me n he’s a good doctor n has given alot of information on fibro n I have been researching this disease I look at this as homework on a daily basis. I stay very postive n try to sink the pain in a well n keep there Some days I couldn’t even walk n now I’m doing better.
I asked my doctor abt taking Relief Factor n he agreed. I am off 4 medications n doing better I still have pain but I can move more than before. I move like a turtle but I am content with what I can do. I can alot of stuff that I couldn’t do before. Going to the bathroom was a big issue now I can go without sitting for an hour n a half just to have a bowel movement.
I heard abt this product on the radio station listening to Dennis Prager I ordered the product n let doctor see it n read the booklet. My doctors name Dr. Mc Curry here in Canon City Co. On a bad day I have takened up to 6 pktts without any side affects. I’m also pre-diabetic I ck my blood weekly n doing well no meds for that.
I take 2 pktts a day one in the am n 1 in the pm but if I feel pain I take another.
This product may not wrk for everyone but it’s working for me. I want to care for myself more since I’m an organ donor n I want to be more active as I was before this disease I want to do away with meds that I don’t need. I’ve heard that acupuncture wrks but the insurance won’t allow it. So far I have been happy with the relief factor n it works for me I have asked doc that if there’s a study for this disease I would like to participate to help find a cure.
At one time I told my doctor that I’d rather trade my menstrual cycle over this disease but it doesn’t work that way. I’m keeping notes on my disease before relief factor n after using the relief factor results to share on my next visit with my doctor.
My friends n family have noticed a big difference in my energy levels for i have always been a doer I am slowly getting my life back. At times my doctor can be strict but I value his option n if you follow your doctor’s intructions you can’t go wrong. I firmly believe that my doctor cares for all his patients n that’s why he is very successfull n it’s tough to get an appointment
Glad you found something Rachel. I hope you find more help 🙂
Hi i think more than a best doctor for Fibro it’s more someone that is open and understanding to all as many seem rather blinkered as you go to one place like i did while back as ive a frost bite type thing on my toe(3 specialists have said&2 said poor blood flow one was with doppler yet Quack in A&E just by looking at it said gout&great blood flow!)yet one of those specialist said Fibro that’s just a pain thing!yet we know full well it’s far more than that!
As if it was just a pain thing why does it cause so many issues with things like eye sight.internals.sleeping issues and a whole host more?
Many seem stuck either in the past or a one trick pony not prepared to learn much either as for one we are all different not just on the outside but inside also.
As my look on it is we are like cakes ingredients so varied like they are but once baked we are a cake &like baking results can be varied.
For me being male plus i guess with Asperger’s im very inquisitive i never take things at face value i want to know how/why etc i went through many things about Fibro etc looked into so many things and much much more not just with it but other things also&how things work/effect us also as we change/age etc along with what changes as we age and effects we have and that has.
But one thing i came to was hormones i tried one of the female pills which had a more natural E etc being 17beta not the very synthetic eythinline type tried for two weeks found the change amazing could walk better not like a duck as muscles tight lost the pain in base of spine when sitting down bladder was great IBS was sort of more in the middle i guess not constipated(I term work in progress as need to study that part more if did again)i slept far better i was still cold like in my hands but they wasn’t painful as pain every where was far better i felt good was tired but had energy as i walked a good distance yet didn’t feel dead afterwards plus my gait/balance was better.
Some things came back many changed/modified though some took along while to return plus some things didn’t or only effect me at extremes like if really tired/worn out but it was like the wheels had moved.
Yet most quacks just think mad or think/say female not male yet we both have T,E&P! plus just because you have high E can’t be male just the same as females can have high T levels and be female it’s just where you are with your body.
A few specialists have said interesting!(i don’t hold my breath)lol
But was at Rheumy this week and one there did listen about it and agreed we are all somewhere between M&F so have to find where/what’s right for each person rather than just being A or B.
But our genetics/hormones etc are under attack constantly with chems/meds along with things in the household like what we use like plastic/EPA etc.
Plus our parents&there’s went through many chemical things like two world wars with the fallout from that as all that stuff don’t just vanish then after the WW2 & into Vietnam etc there was many things given to female to promote births etc Thalidomide is one there was one given that so many of the males born went on to become TG as the hormones they was given was so strong it corrupted the foetus! In short they was used as guinea pigs!
But the best doctor/medic is not someone with stars on there head but someone that is prepared to listen&learn more and more often it’s the newer docs that are better as not tainted with the ole boys brush as many of the old ones are too set in there ways! Mind many should have what the Japs call given a seat by the window(Jap speak for given the heehoo/Bye=Clear yer desk and get out.
I had a hard time doing the quiz since only the first 6 letters showed in the tall narrow boxes on the first half. ‘Somew’ or ‘I felt..’ were the choices.
A lot of people have become their own doctor, and that was not offered as a choice.
I go to NorCal Kaiser, and not one of their 1500 doctors know anything about treating FM/CFS/ME.