Looking for advice

[Timmy Ra]

Hey

First time post, looking for help/advice and wondering if anybody else has similar symptoms to me!
I’ve been suffering with on/off fatigue for over a year now, and currently it’s the worst it’s ever been. Other symptoms I’ve got are painful lymph nodes under my arms and in my groin, tight chest, shortness of breath, head fog and a lower back pain and testicular pain. I also get pins and needles in my feet! Does anybody else have these symptoms?
I’ve had numerous blood tests and scans and thankfully all came back as normal.
My doctor hasn’t given me an official diagnosis yet and has tried me on various drugs such as amitryptaline and steroids, both having little effect.
I just feel like I’m at a dead end now and would do anything to feel better.
Being a father of 3 including a disabled 10 year old I need to get better!
Any advice or tips on a way forward would be amazing!

Thanks in advance
Tim

 

[Helen Schoenfeld]

So sorry Tim! I don't know if you could have m.e./cfs or not, have you been reading up on it? I was totally let down by the medical community, but was given the name of a great practitioner who is a biochemist and a naturopath. He has been a godsend and I've made some improvement. I saw a couple of naturopaths before seeing him who were totally clueless, but thought that they knew all about it. I'm afraid that your best shot may be to do a deep dive into the research so that you'll be a knowledgeable consumer when interfacing with potential practitioners.

 

[Timmy Ra]

Thanks for the reply Helen. From what I’ve read I tick a lot of the boxes for CFS and realise a diagnosis can only be made once everything else has been ruled out, my GP is trying to be fair to him. I guess I just need to be patient but it’s difficult when u feel rubbish everyday and can’t do anything about it! My symptoms seem fluctuate from day to day but the fatigue is pretty constant at the moment. Do you find your symptoms come and go? Thanks again.
Tim

 

[Helen Schoenfeld]

Oh they definitely come and go. I've had brief remissions (one for 3 months), and every day is different. It's good to think of it as being like the weather, you never know what's going to blow in. (That idea is from a book that I'm reading now, which is a huge help with coping. It's called "How to be Sick " by Toni Bernhard.) I was lucky enough to find a used copy online, and it's an enormous help.
I don't know if your doctor knows anything about it but most don't. This is one illness where it's a really good idea to get educated about it, you need to advocate for yourself.

 

[Timmy Ra]

I’ll look out for that book Helen. It sounds like I need to become my own doctor! I need to find the time, which is very limited for me, to do some proper research. Thank you so much for taking the time to reply to me?

 

[CJ Mac]

Hey

First time post, looking for help/advice and wondering if anybody else has similar symptoms to me!
I’ve been suffering with on/off fatigue for over a year now, and currently it’s the worst it’s ever been. Other symptoms I’ve got are painful lymph nodes under my arms and in my groin, tight chest, shortness of breath, head fog and a lower back pain and testicular pain. I also get pins and needles in my feet! Does anybody else have these symptoms?
I’ve had numerous blood tests and scans and thankfully all came back as normal.
My doctor hasn’t given me an official diagnosis yet and has tried me on various drugs such as amitryptaline and steroids, both having little effect.
I just feel like I’m at a dead end now and would do anything to feel better.
Being a father of 3 including a disabled 10 year old I need to get better!
Any advice or tips on a way forward would be amazing!

Thanks in advance
Tim

Hi, Tim. To begin, I really recommend looking at Lucinda Bateman, MD's website www.batemanhornecenter.org She specializes in ME/CFS and Fibromyalgia and has lots of information on diagnosing, treating and researching these illnesses. I don't share a number of your symptoms, but its certainly possible that your symptoms could fit a diagnosis of ME/CFS. (I still question sometimes - do I really have this?) It's thought that there are a number of subtypes who have some different expressions of the illness. Dr. Bateman has a number of different videos and articles on diagnostic criteria, coping with symptoms and even aids for a clinician to help them diagnose the illness. There are also videos for caregivers that might help those in your life. Where do you live? You might post on the forums where you are and see if there are others in your area who have clinicians that they see and would recommend. Another thing, if you can, is to try to track things a little. What makes you worse? What makes you better? Physical, mental, emotional stresses or activities or foods, etc. If you are able to recognize these triggers, then sometimes you can make things easier on yourself by avoiding them or lessening them, etc. It is really hard when the "new normal" or "current normal" is so far from what your life had been like, but it can help to pace yourself in your new normal (much easier to say than do!! IMO). If I were in your shoes, I wouldn't be so concerned with proving the certainty of "do I have ME/CFS or not?", but look for information on diagnostic criteria, how to get care that you need in dealing with chronic illness and how you (and family/friends) might be able to help improve things where you are in this moment. I would imagine it is very difficult as you are probably the one used to caring for others. You are not alone.

 

[Timmy Ra]

Hi CJ. Thank-you so much for taking the time to reply to my post. I’ll be certain to check out that website. I think your right about me trying to find out if I do/don’t have cfs and just concentrate on trying to get better, my issue is finding the time to do the research, I’m flat out with work and then have my family to look after too, I literally collapse at the end of the day!
I suppose I’m in search of a miracle cure but there doesn’t seem to be one and I feel it’s going to take a long time to get better. I like your idea of trying to find out triggers, I think stress could be a big factor but also diet, lack of exercise etc.
One frustration I’m finding is that out of the few people I’ve told about my condition it’s like they think I’m making it up which I find bizarre as the last thing I want is to feel shattered and ill every day, and I certainly don’t want sympathy! Have you found this when you have told people about your illness?
Thanks again for for your help and advice ??
Tim

 

[CJ Mac]

Hi Tim,
It is so bizarre what people will say......I had someone that I told about the constant fatigue and tiredness I experience and she responded (a well-meaning person, mind you) that "oh, isn't it so great when you're really tired and you can get into bed and sleep and feel all cozy." I told them that the rested feeling never comes. I think that people just don't understand. And I think that people are generally not comfortable with accepting that bad or difficult or things without an easy answer or fix can just happen. Isn't that the craziest thing that people would believe that you would want to be this way?!? Insane. I find that the most response I get is "you need to try___________. My ________(roommate, mother, partner, coworker, etc.) did and they are cured." That first blank ranges from exercise to magnesium to certain supplements to certain drugs to cpap machine to naturopaths to detoxing to mindfulness and stress reduction to yoga, etc, etc., etc. Sometimes people can share things that are helpful a little, but most of the time I find they're not unless I'm talking to someone with similar or chronic illnesses.Sometimes I try to give people parameters that they might understand I try to tell people who don't have an illness like this that I used to do Pilates and walk miles each week or I know what its like to feel so good after exercising, but my body gets exhausted and not energized anymore. I also try to tell people "imagine if you haven't slept in three days and you try to function, try to remember things. That is what it's like for me. It is an ongoing challenge.....
I'm wondering - in all the scans did they do any biopsies of the lymph nodes? I reread your post - it sounds like you've hit the basic things and so finding a clinician who is knowledgeable is the next step. I have just found and started working with Theresa Dowell, DNP (Nurse Practictioner with a doctorate) at Four Peaks Healthcare Associates in Arizona and so far we've found some things to help improve things for now. I don't know what country you're in, but she does virtual visits. I live in the US in Washington state. Here's her contact info: (928) 773- 9714 www.fourpeakshealthcare.com As far as I know she is taking new patients. I imagine if she didn't feel like she was the right fit she would recommend a direction. Read her bio on the website for info about her.
Everyone of us wants a miracle cure! It is so hard to function with these debilitating illnesses. I really do hope that somehow you can lighten your load of responsibilities even if a little. I think the hard news is that until some healing occurs most of us on here I bet would say that if you don't lighten your load your body will do it for you. I don't know if you're in a position where you can take any leave or if you have considered that. I'm not able to work right now, but when I was working I did have FMLA that I could take (not necessarily with pay), but I could be absent from work due to my illness and not lose my job. It's so much easier said than done, though, isn't it? Wishing you well.....

 

[CJ Mac]

Hi again, Tim. I don't know if you saw this on another post here, but Cort has put a link to this info put together by ME/CFS clinicians on diagnosing and treating ME/CFS. "Twenty ME/CFS experts from the "Clinicians Coalition" - a group brought together by the Bateman Horne Center - provide an updated version of "How to Diagnose and Treat ME/CFS". https://drive.google.com/file/d/1SG7hlJTCSDrDHqvioPMq-cX-rgRKXjfk/view Maybe this will be a shortcut to your research.

 

[Timmy Ra]

Hey CJ. A lot of useful information on those links, thanks for that??
I live in the UK and various cfs/fm specialists are available but I simply can’t afford it and there are currently no referrals via our national health service due to covid so I must go it alone for now!
I’ve never had a lymph node biopsy as scans show they are healthy and there has never been any swelling just on/off pain which I’m lead to believe is not uncommon in cfs.
Your help has given me the boost I’ve needed to really try and help myself rather than waiting for professionals to help me!
I hope you are healthy enough to resume work soon CJ, I wish you all the best