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As-yet undiagnosed bilateral joint-pain, fatigue, muscular pain

Posted by @palma in Mental Health, Aug 4, 2011

I just joined this site. I am working with 4 doctors from various specialties. No conclusive diagnosis. They are all in agreement that I should next see a rheumatologist. Two MD's that I've seen suspect fybromyalgia or chronic fatigue syndrome or ??

I also live with PTSD.

Its been very hard since lately my health has taken a big hit after a car accident in January and my abilities to do what I could normally do has been greatly reduced since that accident. Other symptoms have emerged. Very frustrating. No clear answers yet...

Anyone out there who can relate or has had a similar experience? I would really value connecting with people who have had similar experiences. What I am experiencing is, at frequent times, very isolating. I am a single Mother of two adolescents. So, support is really quite essential. Overall, I have a great support network. But in terms of the specific health challenges I am experiencing it would be so helpful to connect with others experiencing similar challenges.


Tags: mental health, womens health

China likes this

Posted by @bugs38, Aug 8, 2011

Hello Palma,
Let me start by saying I'm sorry for your ongoing issues, I know it can be hard to keep up the strength to keep striving for an answer. I started having issues when I was in my twenties. Pain in my muscles and extreme fatigue, headaches (which had always been an issue) memory and concentration issues, too. Since that time I've had a myraid of symptoms that sometimes do and sometimes don't have anything to do with what they've now diagnosed me with- Fibromyalgia with possible Lupus and/or Rhuematoid Arthritis involvement. In the last 5 or 6 years my back, hips, knees, ankles, shoulders and neck joints have been a new constant. Before those things would come and go. Often it is hard to tell the difference between what is a symptom and what is a new problem. It is stressful going through the "doctors don't know" stage. Tests, more tests, more specialists, more bills. It seems to never end. One thing I've learned and I hope I can help you with is whether or not there is an actual diagnosis isn't as important as making you feel better. Sometimes those two go hand in hand and sometimes they don't. In my case, I can do a lot for myself. I have a list on my refrigerator for things that help my pain (because during a flare I can't think). Massage has been extremely helpful with the muscle pain. The joint pain is more difficult. Exercise helps and for me the Bowflex has been a great source of pain relief but it isn't something that happened immediately. For instance, the directions may say to do certain exercises for a week. I do them for a month before changing anything. Ice helps sometimes, sometimes not. Heat sometimes, sometimes not. I am hopeful that your Rheumy can help you to feel more like yourself.
Hang in there,


Posted by @palma, Dec 24, 2011

Hi Woolie, Roelie and Bugs!
Its been a long time since I've been on this site. I really thank you all for your kind replies to me reaching out. I have been going through multiple appts/tests etc and at the moment I have been diagnosed with Rheumatoid Arthritis and Fybromyalgia. I am also going through neurological tests for possible neuropathy. Still sorting through it all and sorting through my various treatment options.

How are you all doing?
Thank you again for sharing!


Posted by @roelie, Aug 21, 2011

Hi Palma and Bugs,

I am experiencing very similar circumstances. I also know how isolating this disease can be, whether it is family not really understanding the realm of my pain, or physicans just staring back at you with blank looks on their faces, while I try to determine whether they believe me or not! I struggle with a new diagnosis of fibromyalgia, and have basically just joined this site, because I am looking for ways to better understand my pain, and am looking for a more natural route to take. I have found that my doctor and specialist are very good at pushing pills on me, but drew the line last week when my pain specialist wanted to put me on a new trial of Methadone, just after I told him that I am frustated with the amount of drugs that I am on, and am looking for a more natual approach to controling my pain!

You are right Palma, just having someone to talk (or vent to) is helpful. Someone who understands how debiliating a "flare-up" can be! My husband is very supportive, and I am very blessed to have him understand.

Hearing what has worked or not worked for others is helpful, and I look forward to hearing this from other people in these circumstances. I really think the idea of having a list on the fridge is great, because you're right, you just don't have the same thought process when you are struggling. I had to leave my job as a medical office manager in April, (a position that I have held at for the last 15 years), to just last week starting a new job in a specialist's office for two days a week. I love the new experience, but am indeed struggling with the transcription part of the job. (Of course it doesn't help when you have dictator who has a thick accent and enjoys mumbling!). At any rate, I am trying this all the while keeping my eye out for the "perfect" job. Of course this would include pension and benefits and working 4 hours a day at the most!! LOL, does this job even exist??

Of couse having PTSD would be a difficult situation to manage without having a chronic pain issue, and I agree - a support network is essential! Anytime you need to vent, feel free to send me an email. If you have had success or have been unsuccessful with different trials of treatment, let's discuss them! I recently found out that an older woman in my church has struggled with fibromyalgia, and has had some success in managing her pain, so I am going to hook-up with her to get some feed back. I am really looking forward to hearing what has worked for her.

Take care, and don't lose heart. There must be treatments out there that work, and connecting with people who can relate to your cirumstances is a great thing. Knowing you can tell someone how bad your flare-up has been and having them "get" it, is a good thing too!

Feel free to keep in touch,


Posted by @woolie, Sep 29, 2011

Hi Roelie - I have posted a reply to Palma - maybe it will help too? Woolie


Posted by @woolie, Sep 29, 2011

Hi Palma! I have just joined the site, and feel you may have Fibromyalgia, in which case a Rheumatologist would be the most helpful. I have had it for eleven years. Pain seems to be helped somewhat by Anti-depressents, particularly Cymgen, also Purblocka up to three times a day (10mg) to slow the system down so it is not so painful. Trepeline is good if you have sleep problems - 5 to 10 mg at around eight in the evening. Too much can cause constipation, so use as small a dose as you can. Sleep is very important with Fibromyalgia as is rest, exercise such as walking, relaxation - not overdoing it. The Rheumatologist is the first step though. I also feel very isolated, and the one specialist I have seen in Cape Town just feels my tender points on my back and says I am much better and doesn't seem to listen. I have a lot of fatigue and often can't walk and am forced to crawl. My knees tend to burn as if I have walked a hundred miles! I have some pain, mostly when a cold front is approaching. Then it gets worse. Especially if there is thunder. I would make a good weather lady!


Posted by @palma, Oct 21, 2011

HI Woolie,
Thank you so much for your response. I hope that your are finding some more relief or things that help. I still do not have any answers and am navigating the medical system to try to find some answers and more relief than I currently experience.

All the best to you!


Posted by @aglassofsherry, Feb 20, 2012

Hello Palma, Woolie, Bugs, Roelie! I just joined this site and suffer from what my Rheumatologist thinks I have, Myofascial Pain Syndrome. First he thought I had Lupus but since my bloodwork no longer shows abnormalities, he has ruled it out. It started with pain in my hands, then my feet, and then spread to my muscles and fascia throughout my body. I also had PTSD about 5 years ago and have taken Lexapro on and off since then. I have to take Ambien for sleep every night and have Diverticulosis. I have been taking Ibuprofen for pain but it doesn't really take away the pain. I started a home exercise program using a foam roller doing self Myofascial release and strengthening exercises 3 weeks ago and have had some relief, but some days it is even more painful. I hope that communicating with others with similar struggles will help me to cope with my pain, as the medical professionals in my home community don't seem to want to help me. Let's support each other!


Posted by @jsparks, May 10, 2012

Hi my name is Jason, well I just found this site, and I figured I would also tell you how similar my situation is. I was in a car accident 6/25/11 the guy was texting drifted in my lane, head on at 50mph he died instantly but somehow I survived, and now I feel my quality of life will never be acceptable. I can no long do many of the things I used to do, I just was fired once the doctor release me back to work 2 weeks ago, because I was in a work vehicle at the time they made life hell for me. So now, I am at this cross roads of not a clue what to do. I have done well finding reasons not to end it but I really fear its amatter of time. I can't seem to sleep some weeks then others I can't seem to wake up, its a roller coaster. They found a buldged disk at c3 c4 in my neck but say that shouldn't be causing so much pain they just want me on pain killers, but I suffer from extreme addiction issues so jan 1st I gave those up because they were becoming very addicting. So all and all pretty much hate what that guys mistake has done to my life, and after medical bills and such it left me without a job, unable to return to my career as a diesel mechanic and still have student loans for that education..... I know people say it will get better with time, but no one ever says how long it will be and how much better will it get?? So hoping I learn real experiences here because I have researched the hell out of medical info but this is the first forum I have been to. anyone feel free to advise and I hope to get to know some of you.


Posted by @patsyelsie, May 10, 2012

Jason, I am 71 years old. It has not yet been a year since the accident. Student loans can and will wait. A bulged disk at c3 and c4 can cause many things. Several nerves pass thru that area of your cervical spine. One is the phenic nerve that controls diaphragm and breathing. Is that working OK? No breathing problems? Have you had physical therapy with wet heat applied to the area? Or the little electric jolts to the painful area? Do you hurt at the bulging disk spot or all over the body? Another suggestion, Antidepressants are not addictive and they do somehow help alleviate pain. In fact, do wonders for it. I wouldn't trust just any doctor to prescribe an antidepresant. Psychiatrists know which ones are best for people with pain. Benthere.

China likes this

Posted by @jsparks, May 11, 2012

thank you patsy, well, I am on cymbalta seems to help a little, antidepressants like zoloft and several others don't work right with me, I have done the whole guinee pig in the past, but I am going to a top notch, hard to get into head doctor on the 17th of this month, so hopefully he has a better idea. Physical therapy worked but at 3 months insurance cut it off and all progress seemed to fade. But heat and my little portable Tens unit are very nice. They do work but the effect doesn't last maybe 20 minutes later I have to do it again, if I do need to do something like chores If I am able I wear the tens unit and it does help. couple weeks ago I got a epidural shot in my neck and that worked for about a week,

you asked about the pain, well It has been moving throughout the body, mainly out to shoulders, and about half way down my back, there are several spots, very painful, about the size of a nickel. its hard to explain but I would describe them as pressure points. But Breathing is ok.

thanks again for the feedback


Posted by @patsyelsie, May 11, 2012

If you are without income, can't you apply for Medicaid? That would pay for therapy. The kind of electric therapy I was referring to is not the TENS. It was done to me at a physical therapy clinic. Electrodes or something like that were placed on each side of my neck near the offending degenerated cervical disk. Then a machine passed gentle currents thru the muscle at those two points and it felt like a massauge. Really helped. A chiropracter once told me that a bulged disk can be moved as little as one tenth of a millimeter and then the pain is gone. I don't go to chiros any more though. Prefer other methods. Also, because i am older, Medicare paid for a little machine i use at home. I call it a neck stretcher. You strap your head into it, pump it up and it gently moves your head up, thereby stretching your cervical spine. Then you put it on hold a few minutes to keep it at the comfortable position. I had a choice between that and a cervical collar to wear around the house. Sounds like you really have a few pinched nerves. A neurosurgeon recommended these two things for me. He felt I wasn't bad enough for neck surgery--yet. I hope this info is of use to you. patsy, age 71


Posted by @mollyw, May 11, 2012

PatsyElsie, One can apply for Medicaid, but you should know it generally takes AT LEAST 2 years to get and several applications, and I'm guessing a vague, uncommon diagnosis makes it even more difficult.


Posted by @china, Jun 7, 2012

me 2. try all medicine. Paxil now


Posted by @mollyw, May 11, 2012

I also just joined. I don't see any mention here of Mixed Connective Tissue Disease-MCTD. It involves overlapping symptoms of lupus, fibromyalgia, polymyositis, but has a distinguishing antibody present. My 33 yr old daughter was diagnosed after a bout with Epstein-Barr and then a flare-up several months later--and many tests and 4-5 doctors. She has frequent flare-ups of pain, not feeling well and sleeplessness, as well as some beginning joint damage in her hands. She also has severe migraines-don't know if they are related. The drugs for fibro do not work. Her rheumatologist has her on methotrexate, which helps some, but makes her really tired. She had to leave her job 1 1/2 years ago and subsequently could not afford to live on her own. She gets some disability from her former job, but it all goes to pay COBRA ins urance and med bills. Her COBRA runs out in a month. she has begun application for Medicaid, but wonder if she will ever qualify. Several people who have posted here have described very similar symptoms

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