Detoriation

Hi all

So I've recently been diagnosed of fibromyalgia. It's a relief as I had been misdiagnosed of several other conditions that didn't quite cover all my symptoms. I'm now diagnosed with 6 conditions which is a lot less than what I was previously diagnosed off. The reason I'm writing is because I want to know if anyone else's health has deteriorated with fibromyalgia? I know myself and my body well and recently I have gotten a lot more symptoms than I ever had before. It's likely that's one of the reasons the doctors managed to diagnose it this time, because I am getting worse. I never used to experience pins and needles I now get them almost every other day. The fatigue is stronger than ever before and as a result I have stopped working for the time being. The muscle spasms when i wake up are now daily and can last for up to 4 hours whereas 3 months ago it lasted for half an hour and was only like 3 times a week. There are many other things that have gotten harder in the past 3 months. I've read up loads and I see that apparently stress can make you worse and also people with fibromyalgia can be sensitive to smoke and certain foods which can increase symptoms. I'm wondering if it's possible that I'm getting worse because I'm smoking more and I've changed my diet? I'm dealing either way but I'd like some I this pain to go down a bit because I am now taking the max dose of naproxen and dihydrocodeine daily and it really messes with my ibs and mood and makes me more tired like chronic fatigue wasn't bad enough lol

27 Replies

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  • Stress will certainly make it much worse as will certain foods and smoking. I find that noise, stress, not pacing yourself, weather particularly damp or humid plus certain foods affect me badly.If I eat pork or have any alcohol, even a minute amount, I am totally wiped out as though my energy switched has been flipped off. The fatigue resulting from one glass of Pimms will finish me off for at least 24 hours then having to lie down only makes the stiffness worse. Generally in the mornings I am totally seized and this takes a few hours to release. If I go away to a warm, very dry climate (Egypt is best despite the troubles.) and get away from family stresses I improve rapidly. Not something you can do on a regular basis.

    Hope this helps.

  • Hay kathkallak

    Perhaps if you used a smaller glass than one that takes the whole bottle, you might not have to,lay down for so long !

    Hayesider xx

  • Hay slippingintochaos

    I think you have identified a few things yourself that might help if you changed some habits.

    A little more information about where you get pins and needles, muscle spasms, what your new symptoms are would be helpful. Concerned that you may be putting these all down to Fibro, when there could be another more worrying thing you need to discuss with your GP.

    Who did your diagnosis, GP or RheumyCon, and how did they do it ?

    Yes, have some ideas that might be helpful, but need the information above before suggesting. And always discuss things with your GP before trying anything new, they can see the whole picture, and will know or look up if there are problems with other meds.

    Hope you can get a slice of today's sunshine pie, and a bowl of pain free desert.

    Hayesider

  • To be honest I googled everything in fibromyalgia and the migraines chronic fatigue and Ibs are all symptoms also the body doesn't repair properly in sleep so spasms in the back is fairly common a d so is pins and needles in soles of feet toes and Palm of hands and fingers which I where I get them. Also facing a hostile situation with my mum who thinks I'm fine and it's an excuse not to clean my room lol. Have been sleeping rough a little so I'm sure not having somewhere steady to sleep or having a job having fun out of money and not having any support for food mess travel etc are all probably stress factors

  • Having run* out of money

  • Chronic fatigue, headaches (brain fog) and all over pains are also listed symptoms of Low thyroid Hypothyroidism and vitamin B12 deficiency.

  • Hello. I am a fellow fibromyalgia sufferer and have had the same problems as you in terms of getting a diagnosis, and deterioration of health. Mine started off with wrist injuries which would not get better. Then I sprained my ankle which wouldn't get better. Then I started getting unsteady on my feet and falling over walking without support. Leaning on 2 sticks I began having terrible pain in both shoulders. Pain spread all over body and I became bed ridden for 6 months. With the pain that would not go away. Symptoms were mistaken for depression, anxiety and all being in the head. Yes I was depressed but because I was in pain!! I felt misunderstood and not listened to. I felt upset and angry after rheumatologist told me to break up sticks and throw them away. There is nothing wrong. You can get better. You are not crippled with rheumatism like a 9 year old boy I treated this morning. Frustrated. When I returned to hospital to see another member of rheumatology team I was diagnosed finally with fibromyalgia and she was very helpful. Started me on amitryptyline, tramadol and recommended books I could read to help me better understand my condition. I also have chronic fatigue syndrome. The 2 illnesses are linked. Now I still get bad flare ups but no longer bed ridden. I know what to expect now and have better idea what to do when these symptoms flare up. To rest at 1St then gradually try to reintroduce doing things followed by regular rests. A nap in the afternoon to revitalise me. Exercises for fibromyalgia. Regular walking. I also take Gabopentin. Use tens machine and pain gone pen. Ease pain. Often symptoms disappear next day after resting. Sometimes they last week's. In my neck mainly. Knees. Gums. I get muscle spasms in legs and sensitivity to light. Smoke smell makes my nose congested though not affect other bodily symptoms. Hope you soon feeling a little better. From Sarah

  • Also try to do any necessary tasks such as housework early in the day. But if lots to do take regular rests between each activity you do. Don't try to do it all in one go. Ask other members of family to help. If possible. From Sarah

  • With me I find it is stress usually that lead to a flare up of symptoms. Hope this helps. From Sarah

  • SarahE100, you might be interested in my reply to slippingintochaos, (if not please do ignore.)

  • fibromyalgia can be due to over contracted muscle which needs to be stretched out. The stretching out of over contracted muscle can be quite painful.

    The body is an engineering system with a stress breakdown point. Go over the stress breakdown point and everything falls apart very easily. With the fibromyalgia you are likely to be be very near the stress breakdown point of your body's engineering system so it will not take much for things to fall apart.

    You need to find ways to reduce stress in order to move away from the stress breakdown point. Your brain could be working quite hard to deal with the pain control issues. This means that more rest could be needed in order to avoid the brain switching off completely and entering depression type symptoms.

    See if a sports therapist can offer some help with the over contracted muscle. Yoga under an experienced yoga teacher would help understand and obtain better muscle coordination. And thus hopefully improve your functioning.

    Hope this helps.

  • Have a look Stiff Person Syndrome. The spasms could be that.

    You need to see a good neurologist who can think outside the box.

    Good luck and let us know how you get on.

  • Spasms can also be anxiety related. In my case. Was checked out at hospital recently. Also lifting something too heavy can cause. From Sarah

  • Are you 100%sure you have been correctly tested for

    Pernicous aneamia

    Hypothyroid

    Coeliac or gluten sensitivity

    Are you also sure to have not one single piece of cookware that is non stick or aluminium or foil use only stainless steel . glad or china

    Pins and needles are normally B12 deficiency and especially Pernicous anaemia

    All too often labs only test TSH which totally misses Central Hypothyroid its different to classic Primary Hypothyroid

    Sensitivity to wheat or gluten or dairy can cause a multitude of symptoms just the same as Aluminium or Flouride can

    Far too few doctors start from the basics and really listen to patients instead they are ioften too ready to roll out the CFS or ME or Fibro bandwagon

  • Oh I am diagnosed as aneamic as well both irom and b12 on supplements but no change also I know I'm hypersensitive to gluten never thought about aluminium also vitd deficient so that contributes to body aches but I know it's more than just that I'm almost ceetain I have fibro but maybe I haven't been clear. I also have anterior knee pain syndrome, hip displaysia, Ehlers danlos syndrome (type 3 hypermobility) which is highly linked to fibro cfs, aspergers syndrome, borderline personality disorder and anxiety plus I suffer from sever stress which manifests strangely in my body has caused black outs and alopecia... picture of perfect health lol I'm sure my smoking habits are helping a bunch :p

  • I highly agree with reallyfedup123, we read and help people with symptoms like you daily and they later find it is usually down to either Hypothyroidism or B12 deficiency or even being diagnosed, but still under treated and not being given enough medication to get rid of the pains. To get myself well from fibromyalgia I needed to work it out myself. Once optimally medicated my all over fibromyalgia fell away almost overnight.

  • Thank you for your reply Coast walker. I have been tested for thyroid problems about 3 years back and told I do not have a thyroid problem. However I am un sure whether I suffer B12 or ferritin deficiency. May be worth having this checked out. Thank you. From Sarah

  • Hi again SarahE100.

    Too many thyroid patients are told by Doctors they do not have a thyroid issue, or told their bloods are NORMAL ??? , nothing is wrong with them, yetl they still have all these thyroid/B12 (or Both together) presenting symptoms. How can that be Normal ?

    Ask for your B12, vitamin D and ferritin to be also done and ask for a printout of ALL your bloods (+ previous bloods done) and ask for their ranges too and pop them up on Thyroid Uk for members to help you forward. If I relied on my Doctor for thyroid issues I would still be ill.

    Ps. Did you have a cholesterol blood test done, if so what was the result ?

  • Hi Coast Walker. Thank you for your reply to my message. Hope you are OK. My GP sent me to the hospital to have my thyroid checked. They gave me a blood test. The consultant said to me after my blood test, 'You did have a thyroid problem, and now results show you no longer have a thyroid problem'. I wasn't in the room more than 30 seconds. I couldn't even ask any questions. I was discharged just like that. How can that be?? I haven't been checked for B12, ferritin and vitamin D so feel your suggestions are a good idea to have these checked. I will have to try asking GP for read out of results. My cholesterol results I am afraid are rather high. This summer they had fallen from 5.7 down to 5.5. The doctor wanted to start me off on statins but I refused. I am only 37. And statins are associated with muscle pains too. I also have diabetes 6.6. I am on metformin 3 times daily. BP I take lisinopril. It is still slightly high but not enough to have tablets increased. I also have had misfortune since end of June to develop frozen shoulder which thankfully is on the mend now. And I suffer mental health issues which are under control now with medication. And also suffer neuralgia pains in my gums. I take gabapentin for fibromyalgia and neuralgia flare ups. 4 tablets 3 x daily. As and when required. Spasms in my legs occur when distressed or anxious or upset. Means my legs give way on me and I am unable to stand without support as I just fall. How long have you suffered your symptoms coast walker? From Sarah

  • Hi again Sarah, sorry for my late reply.

    Please do join also both Thyroid Uk forum site and for B12 Deficiency PAS (Pernicious Anemia forum) Here on HU. Members are also good with vitamin levels, iron levels and more.

    Before thyroid bloods came about years ago, Doctors knew high cholesterol pointed to low Thyroid (Hypothyroidism) Docotrs treated patients with Natural Desiccated Thyroid and gave enough till your high cholesterol fell into back to normal. High cholesterol has an invert effect on Low Thyroid.

    You need the results of your blood tests and their important ranges ASAP SarahE100, it does not add up.

    When we get told we have Low Thyroid (Hypothyroidism) it is usually a life long condition, so I would be concerned about being told one day you have a thyroid problem next you don't ? Too many Docotrs are getting it wrong and not doing the correct bloods. they often miss the FT4, FT3 and both antibodies. Without the correct bloods you do not get the correct result.

    Most of us on the Thyroid and PAS ask for a printout of their bloods and ranges and pop them up on thyroid UK, or the PAS forum sites here on Health Unlocked. Members of these forums often later find their blood results do point to low thyroid or low or deficient Vitamin B12 yet their Doctors have told them they are NORMAL, nothing is wrong with them, do make sure you are not one of those many patients that daily get overlooked/missed or ignored. Just take a look at the website which title says it all - Stop The Thyroid Madness stopthethyroidmadness.com it is an American site, here in UK we have thyroiduk.com

    We all have a right to our own blood results, it is stated in Law, our blood results do not belong to our Doctors, so be brave and do think about asking your Doctor for a printout of them. Your Doctor will normally be sent the results even if bloods are done else where.

  • Ok

    Aneamia especially low ferritin

    Low vitd3

    Low b12

    Gluten sensitivity

    High cholesterol

    Alopeacia

    Are all classic in Hypothyroid ....join the thyroid forum on health unlocked and the pernicous aneamia one too

    Theres an excellent UTube piece on PA by Dr Chsndy and the PA society as well

    You truly must give up smoking its pouring all manner of toxins like cadmium into your body

    ALUMINIUM attacks the thyroid too and is a cumulative neurotoxin

    Get hold of all your test results your legally entitled to them

    I bet all they tested was TSH

    Its vital that

    Thyroid antibodies

    TSH

    Free t4

    Freet3

    Intrinsic factor

    I believe you will find the true cause of your symptoms are Hypothyroid or Pernicous aneamia because pins and needles occur in low b12 and PA mimics hypothyroid but complicated by poisoning effects of aluminium and cadmium

    Sadly very few medics ever think of Hypothyroid or fail to test beyond TSH

    They certainly never think of aluminijm poisoning or pernicous aneamia

    What illnesses affect other family members ?

  • To my knowledge the only health problems anyone in my family have had is my uncle is partially paralysed and my sister had short tendons I was born premature though with a hernia a hole in my heart and a dislocated hip along with a lung problem of some sort possibly a mild form of cystic fibrosis so with the smoking I now get bronchitis and chest infections monthly at least

  • Well part of the way fwd is give up smoking PDQ no matter how hard it is

    Or lung Cancer or emphyseama will be added to your problems

  • Right now the smoking is staying but I am attempting other lifstyle changes e.g. my diet and exercise regime will be changing this week I'm going to a pain camp type thing so hopefully it will help as currently my diet is atrocious and I just sit around all day wanting to do stuff but too tired too but I don't really sleep either so I am trying to help myself not easy with all my psychogical issues

  • all well and good but if you have PA or hypothyroid as I am sure you do trying to exercise will simply cause more pain

    Until you clean up your diet and stop smoking you cannot get on an even keel

    If aluminium is in the mix getting rid of that will start to make a difference

    sprinkling coriander leaf on salads etc is an excellent way to help get toxins out of the body

  • Also I don't have high cholesterol sarahe100 does

  • Pins and needles is a classic symptom of B12 Deficiency and Low thyroid (Hypothyroidism), both also have Fibromyalgia listed in their symptoms.

    *Doctors are well known for missing/over looking people with both B12 Deficiency and Hypothyroidism and don't seem to connect it all up with fibromyalgia, many fibromyalgia sufferers are often told nothing is wrong, or fobbed off and prescribed depression pills and some even told it is all in your head.

    Suggestion only to rule out both low thyroid and/or B12 deficiency - Ask for a printout of your last bloods done and their ranges and pop them up on both Thyroid Uk and PAS (also for B12deficiency) Forum sites here on HU

    Also You could be low in vitamins and iron, but again most people get overlooked. But easy for Thyroid Uk and members on PAS to spot a problem of low iron and deficiencies. Vitamin deficiencies can cause pain in our bodies too. Without these forum members help I would still be left with all over Fibromyalgia, low ferritin and vitamin deficiencies too, members on both sites have also helped my family members get well again where medics have let them down too.

    Stop The Thyroid Madness ( www.STTM)

    www.thyroiduk

    www.B12deficiency