Unexplained chronic pain?

[kinkyfuckery]

Does anyone else suffer from unexplained chronic pain?


My history:
I've had painful joints and weak wrists since I was a teenager (I'm 30 now). Arthritis is strong in both my mum and dad's family so it was kind of excused/explained as that. In the past five years or so, it's gotten increasingly more painful.

I was seen by a rheumatologist a few years back, who scanned my wrists and said there was no evidence of arthritis. So back to doctor who prescribed regular paracetamol or ibuprofen.

It's just gotten worse. I have pain ALL OVER my body. My legs ache as if they are encased in cement. I get shooting pains up my limbs. I get bad headaches. I suffer from brain fog, struggle with my words at times, and go through periods of extreme exhaustion.

My GP diagnosed fibromyalgia (based on blood tests being 'clear' for whatever she tested) and we started trying different meds. I have a huge resistance to meds. I currently take 600mg pregabalin per day, slow-release tramadol at night and up to 100mg tramadol at a time during the day as needed. It does nothing. People are always amazed that I can function on tramadol as it knocks them out; It maybe takes a slight edge off the pain for me (takes 2 hours to 'kick in' and lasts maybe a 1/2 hour) but nothing more.

I've been seen at the pain clinic recently, and have been using a TENS machine on my knees when walking - which helps a tiny bit. I am awaiting an appointment for Nerve Conduction studies, as they believe it may be a nerve problem rather than fibromyalgia.

I just feel completely lost. If we can't figure out the cause, how can we figure out the treatment?

[Mumyum1]

Sounds awful, I'm sorry to hear what you're going through. The 'seronegative arthritides' can be very hard to diagnose as there are no conclusive tests. Have you considered asking for a second opinion re rheumatologist? Or acupuncture from a fully qualified practitioner? My dad had urinary inc

[Mumyum1]

Oops. Fat fingers! Urinary incontinence following an operation on his prostate and acupuncture sorted it out. And then he noticed that all his aches and pains had gone. He's 70, totally messed up shoulder from life as a carpenter. Another thought is radical dietary changes - Google raw foods or raw vegetarian/vegan diet advantages - I've heard some really good anecdotes.
Good luck!

[kinkyfuckery]

Thanks for your response Mumyum1

I haven't had second opinion from rheumatologist, no. I did ask my GP about seeing a neurologist but she is adamant that it is fibromyalgia and said it would be a waste of time - mine and theirs.
As far as I know, if anything shows up on the nerve conduction tests, it will be an MRI. Friends and family are concerned as they believe I have a lot of MS symptoms, which I am starting to see too.

I have briefly looked into dietary methods - especially paleo, but it all looks very complex and not sure I have the energy at the moment to embark on a huge change. I am at Slimming World at the moment but seem to be going backwards. The pregabalin causes weight gain and I have gained 4 stone since starting it - which I had lost the year previous through SW. Am really struggling though

Will look into the possibility of acupuncture, thanks.

[Mumyum1]

Write to your GP and repeat your request to see a neurologist. State that you are concerned regarding a possible MS diagnosis. State in the letter you expect a response in 14 days. If there is no response resend the letter with a fresh cover letter and ask for response in 7 days. If she denies your request or does not respond write to the Trust. And change GPs. You need to pursue, life's too short to have regrets as it is, and to let obstacles like this GP stand in your way of answers. Good luck.

[daisychicken]

I agree that you need to repeat your request for a second opinion from a neurologist just to put your mind at rest. I agree stating concerns re MS and that you'd like to have it ruled out

However, the symptoms you describe could be Fibro as I have Fibro and have the symptoms you have plus others (there is a long list of symptoms for Fibro and every Fibro 'sufferer' will have different symptoms). Problem is, Fibro and many other conditions have similar symptoms. Why do you feel it might be MS over Fibro?

If you are awaiting an appt for nerve conduction tests, the other option is to consider if it is worth waiting for those results before asking for an another specialist appt? At least you could then go to that specialist and say "I've had this, this and this done" along with "my symptoms are x,y,z, what do you think it could be?"

[LongTimeLurking]

It does sound like fibromyalgia or chronic faituge type symptoms. However lots of other conditions produce symptoms that are similar to that of fibromyalgia. For example many people with fibro find they have low B vitamins, low vitamin D, mild hypothyroid, etc. Have they ruled all these out?

[Cocolepew]

Have a look a Lupus symptoms I have it and it causes joint pain with no damage to them like Arthritis would so wouldnt show up on xray. I also have symptoms which are similar to MS.

[temporaryusername]

Do you think the Pregabalin is helping? I was on that for a while, can't remember the dose but less than 600 for sure. I found it helped at first, but when I came on, the things it had helped with didn't come back so badly, so I wished I had come off it sooner. I say that because it caused me weight gain too, and while you can lose weight on Pregabalin it is harder to do and to keep off. I think when you have widespread pain and joint problems it is much harder to carry weight without making your pain worse. I used to think about how much harder it was for me to carry a heavy bag than for others, yet I was carrying extra weight all the time. If you do decide to reduce the dose, do it very gradually as it is one you have to come off very slowly.

I agree that you need to be firm about a neurology referral, not because I think you have MS, I wouldn't know, but because you need that to be ruled out. I would be think about changing GP but also try the broken record approach, every time they say not worthwhile just say 'well, I feel it is essential for me to have that ruled out' or 'well, I feel that the referral really is something I need in this case and would be really helpful if you could arrange that'. I also think you should be under the care of a consultant rheumatologist. They may not find a definite diagnosis, and that won't necessarily be bad news. Normal blood tests are always good news. But, they need to re-assess you fully and possibly monitor you for some time. Rheumatology can be a changing picture, a scan of your wrists from some years ago is not sufficient now. Your symptoms have changed.

I personally do not feel that a GP can diagnose Fibromyalgia based on clear blood tests. The situation is much more complex. Fibro is in a way a diagnosis of exclusion anyway. My physiotherapist told me that she would only be prepared to accept it as a working diagnosis from a specialist. Also I don't understand how your earlier pain was explained as inherited arthritis without further tests. What kind of arthritis is in your family? Have you ever had very swollen joints and a raised ESR? Do you have very flexible joints, as in bending far each way? Sorry for all the questions.

[temporaryusername]

Re the pregabalin, I mean came off not on!

[angeltulips]

Brain fog, shooting pains and exhaustion?

Have you considered EDS or hypermobility? If the pregabalin is not touching the sides then try gabapentin - and stop exercising (for now) esp yoga, do some Pilates and see a knowledgeable Physio

Other than that - lupus? MS (sorry)? Definitely see a neurologist, but go and see prof Grahame and/or John outhwaite too.

[kinkyfuckery]

I would like to come off the pregabalin, but the GP (stand-in, as mine is on maternity leave) wants to try a little longer with the diet, but it;s reaalllly not working!

I did query lupus with my own GP and she did a blood test which was clear apparently indicating not lupus.

I did ask about an MRI to rule out MS and was told that the pain clinic would look into that - so I suppose it's a case of waiting for the nerve conduction tests then seeing what comes next

We have several types of arthritis in the family - mostly osteo- and rheumatoid, iirc. No swollen joints that I ever notice. I was always very flexible and mobile as a child/teen, possibly a bit more so than many others, but no known dislocations, which I think also makes hypermobility and EDS a no?

I just want them to rule out everything else, before diagnosing on exclusion, yunno? A lot of different possibilities hold a lot of very different treatment/maintenance plans.

The pain clinic are incredulous that further investigation hasn't been done in these years I've been suffering with this, and are really convinced that it's neuropathic and not 'just' fibromyalgia, though I may have it alongside something else.

I have to go back to the stand-in GP in the next week or so to review my ADs, so will maybe ask about referral to neurologist for MRI in the meantime whilst waiting for further tests.

[temporaryusername]

I would definitely ask for that referral, you can always tell her that if other tests come back with something relevant you can cancel as you'd still be on the waiting list (although obviously you won't cancel).

I really agree about needing to know that things have been ruled out, I've been in a similar position. I don't think blood tests are conclusive for lupus, it can take years to diagnose. A rheumatologist would be a better bet, I still feel a referral to one is important. I'm also not sure that EDS and hypermobility are ruled out, again the rheumatologist may help with that. If you have any problems getting the referral you need to spell out to them how much this is affecting your life, and that even if a rheumatologist finds nothing to help with diagnosis, that alone will give you more focus in looking for other ways to manage your disorder. No swollen joints is a very good sign though. I know sometimes when people say things are good signs it is hard to understand when you're still in so much pain, but ultimately with many rheumatology diagnoses the prognosis and treatment aren't great.

If nothing systemic is clearly found, then the problem may still be systemic but it is also worth considering local causes of pain. By that I mean that when you have chronic pain in many areas it can be easy to overlook that some have local, mechanical causes. Orthopaedic consultants can be the best at getting those but ask the rheumatologist too, and if you can find a good physio they might be able to spot signs which you can then question the doctor about. In general I think physio is really important, but sometimes they need to know what is going on to target certain muscles.

I lost weight on Pregabalin, but I also gained it back on Pregabalin. That drug means you need iron discipline, and that loss is slower. Even reducing it a bit might help, under careful slow withdrawal which the pain clinic could advise on. I wish I'd come off it sooner because it stopped doing much, but you don't know that till you come off it and see whether it was worth the side effects or not. It took me ages to come off it gradually, and I found I didn't worsen so for me it wasn't worth it. You might be different, but you should discuss trying with the doctor.

Sorry for the long long reply, I just know what it is like to be in your position and want to help, but probably can't really. Don't give up hope though, they may work out what is going on and even if they don't, things can improve. If you want, feel free to pm me with every random symptom! I'm no expert by any means, but if anything strikes a chord with anything I've been told I'll let you know and it might be worth asking about.

[cremeeggsrock]

please push for MRI, im waiting for one in the next two weeks! but have looked at private for speed and looks like you can do one for £200 ish may be worth it if docs wont refer you, even if it just rules out MS its peace of mind either way! I have Ms symptoms but different to yours, hope you get some answers and relief soon....

[daisychicken]

kinky I'm hyper-mobile...

I didn't find out until I saw a physio for the 3rd or 4th time due to severe SPD in both pregnancies. I'd had no dislocations or anything like that and it was only talking to and having an examination by (yet another) physio that it was diagnosed and the coin went ching! as everything else added up.... my overall diagnosis still led to Fibro but.. we are all different and you need the tests to rule out other causes first.

So it possible you could be hyper-mobile and just not know...

I can't believe you haven't had any forms of arthritis ruled out, especially with your history. I also have a strong history of arthritis and it was the first thing my GP ruled out. I agree ask for the referral and for a rheumatologist to rule out arthritis. Do Push for these x

[Me23]

I would definitely get your vitamin d levels checked if you haven't already.

[Queenoftheworld101]

My daughter went through severe, severe muscle pain and tight muscle spasms last year. The pain was excruciating. Nothing helped. I found a blog after a lot of research about a lady who had same severe pain and it went away after she cut artificial sweetners and sugar alcohols from her diet. Things like xylitol, sucralose, sorbitol...we noticed her vitamins had artificial sweeteners. vitamins and juice. And low fat dairy she was eating. They add sweeteners in there. 2 weeks later pain began getting better, months later this pain is completely gone. Turned out to be a reaction to artificial sweeteners and sugar alcohols. Theres medical journal describing a lady with fibromyalgia whos symptoms went away after she cut sucralose from her diet.