Hello again!! Questions regarding pain

    • Anonymous
      October 26, 2008 at 10:49 am

      I’ve hadn’t been able to find this forum in almost forever. Was there a name change? Thank goodness I registered my birthday and I’ve now saved this link in my favorites.

      I was diagnosed with GBS in 1991 at the age of 25 and have residual issues (foot drop, walking with a cane, etc.). As I age, I’m experiencing more pain, mostly in my legs and back. I’ve gone to quite a few doctors and usually they prescribe PT which is a good short term fix. However, as I don’t have access to some of the equipment they have at rehab, I’m pretty much back in the same spot 2-3 months later.

      I’ve noticed that many people on the forum take medication that may be geared towards CIPD/GBS patients. None of my doctors have ever prescribed these meds and they usually give me Vicodin, Motrin 800, Percocet, etc. I’ve gotten to the point that I have chronic pain and nothing is helping. I recently went to an Endocrinologist and he advised that my Vitamin D was extremely low, my cortisol very high (stress hormone) and that I may have a thyroid issue. It’s good to “almost” have a diagnosis, but I still have the chronic pain as well as fatigue, etc. which isn’t acceptable as I work in a fast paced, stressful environment (no change with that anytime soon and I have to work).

      So, my long ramble is basically this: I seriously need to locate a knowledgeable GBS doctor. I’m not really sure how to go about doing this. If someone in SE Michigan has any ideas, please let me know. In the alternative, can someone supply a list of medications that I can probably bring up to my current doctor? She initially seemed receptive to my issues but now I think I’m just receiving the standard band-aid. Perhaps it’s because she doesn’t have a lot of experience with GBS or perhaps she believes I’m a hypochondriac…trust me, I’m not. I’d much rather live pain free than complain about real pain. smile

      If anyone can give me any information, I’d really appreciate it.


    • Anonymous
      October 26, 2008 at 12:16 pm

      Hi Tina,

      I have a list of Drs., call me @ 330-724-2608.

      Neurontin has been mainly used, until the last two years. Lyrica is now what is being prescribed. It has the huge advantage of staying in your system 80% longer.

    • Anonymous
      October 26, 2008 at 3:23 pm

      hello tina my name is jim and i got gbs in aug 05 but due to probs with nerve damage.i am un able to work but good luck with docs i live in richmond ind and i have to go to indy to doc. it is hard cause legs go numb after 15/ 20 min into drive and the pain .i hope you have better luck cause every thing they gave me didnt work. only thing i take is percets and they dont really work . i guess my system is real screwed up but telling disability this is another . i,ll pray you find what you need cause i sure didnt in richmond. and now lost medicade so i may be getting sick from pain cant pay docs or meds sorry for rambiling jim.:(

    • Anonymous
      October 26, 2008 at 5:06 pm

      i believe i was taking neurotin for nerrve pain also maybe lyrica.my mom is in charge of my meds but she is not home to ask.

    • Anonymous
      October 26, 2008 at 6:14 pm

      Hi, Tina, welcome back. yes the name did change this year to gbs_cidp.org to better reflect the many CIDPers, but the old name should have directed you to the new name.

      One suggestion, if you do PT again, ask them to make a priority to get a program that you can continue at home. It is a lot of hard work to get better with PT just to not be able to keep up the progress after stopping.
      For neuropathic pain which is often felt as burning or aching in the feet and hands or tingling or pressure or excess sensitivity at the end of ones limbs more than in the middle of one’s body, gabapentin (Neurontin), Lyrica, or sometimes Cymbalta help a lot whereas traditional pain medications do not help as much. This is because the nerve pathways are damaged and misregulated after GBS/CIDP. These type of medicines help the damaged nerves act more appropriately.

      Cymbalta is officially an antidepressant, but it also works for diabetic neuropathy. I think it is not officially “indicated” for back pain, but it helps many people with this and trials to confirm its benefit in groups of people with back pain are happening.

      Lots of people are vitamin D deficient because of living in “northern” areas and getting less sun and no drinking as much milk (Vitamin D fortified) as in the past. The interesting thing is that there is some research into the role of vitamin D in autoimmune diseases, particularly MS. I take extra vitamin D daily although I have never been tested for deficiency, but I figure it will not likely hurt to take a daily amount, that it might possibly help the immune system, and that it is likely to help protect my bones if I fall from the effects of the neuropathy. You are supposed to get enough vitamin D made by your own body if you are in the sun for about 15 minutes a day. It is harder for those of us with difficulty walking to get to sunny places outside to sit or walk. Maybe I should make that part of my PT routine???

      You do not say what your thyroid concern is, but one concern is autoimmune thyroid disease, something that a number of people on this site suffer from as well as having had the other autoimmune disease of GBS or CIDP.

      Good luck to you and I hope that you find a better management plan for pain. Have you noticed the GBS-CIDP foundation biannual conference near Chicago in a couple weeks? Information is on the home page.

      Oh, and happy birthday.
      WithHope for a cure of these diseases.

    • Anonymous
      October 26, 2008 at 8:03 pm

      Thank you guys so much for the responses and feedback.

      WithHope…thank you for the birthday wishes!! 🙂

      They haven’t yet pinpointed what type of thyroid issue I have. The tests will be repeated in three months to see if my numbers are the same. I wonder if the thyroid problem is another residual of GBS/CIDP?

      The doctors are of the belief that some of the pain, cramps and muscle spasms may have to do with lack of Vitamin D. I believe your Vitamin D levels shouldn’t be lower than 30 (don’t quote me on that) and I was at a 6. The endocrinologist prescribed 50,000 iu of Vitamin D per week (I’m in my second week) and I’m hoping this will at least help with the chronic fatigue and cramps.

      It would be lovely to attend a GBS/CIDP gathering of sorts, but unfortunately, I no longer drive…big huge bummer!! But, at least I have you guys on the forum.

      Be well

    • Anonymous
      October 26, 2008 at 8:12 pm

      Hi Tina,
      Antidepressants such as Celexa works as adjunct therapy for pain, muscle relaxants such as flexeril also works. I’ m also taking the medications that your taking. I agree sometimes it doesn’ t work. If medications doesn’ t work then try the over the counter ” Salonpas, Thermapatch, or Icy hot”.- –
      Eden( GBSx2).

    • Anonymous
      November 2, 2008 at 1:36 am

      Hello Tina,

      While many of us have both thyroid problems and GBS/CIDP, it is highly unlikely that thyroid problems are a residual effect. Nerves don’t seem to play too much of a role in thyroid activity.

      How much do you know (and are willing to share in public forum) about your thyroid numbers? I assume that they actually tested you for the amount of TSH (thyroid stimulating hormone). If that number is low, it means that you are producing too much thyroid hormone. An overactive thyroid leads to loss of sleep and a high metabolism. If it is high, you are producing too little. An underactive thyroid reduces your metabolism and leads to fatigue and possibly neurological symptoms.

      Are you taking any medicine for your thyroid issues? If not, I assume that the TSH number was borderline and they want to see if it repeats. If so, then they will be looking to see if the TSH number moved into the normal range. They should be able to tell after 6 weeks, though, not three months.

      Godspeed in sorting out the thyroid issue.

    • Anonymous
      November 2, 2008 at 9:09 am

      Thank you for advising that thyroid issues aren’t necessarily related to GBS/CIDP. Now I’m beginning to wonder if the thyroid issue is due to the fact that I had a left nephrectomy and partial adrenal gland removed in 2004.

      I’m not sure which numbers to provide from the doctor’s report. In layman’s terms, the report indicated that I may have a “form of thyroid hormone resistance”. They haven’t prescribed any medication. Oh, and so far, I exhibit symptoms of hypothyroidism (if the information I found on the internet is accurate). I’m currently dealing with unexplained weight gain and chronic fatigue.

      I’m concerned that they’re waiting 3 months between tests. So, now I’m not sure how to proceed. Do I “insist” that they retest now within another week or two (the date of the test was 09/24/08)?

      I appreciate any information you can provide.


    • Anonymous
      November 2, 2008 at 3:39 pm

      Thyroid hormone resistance is a fairly new concept that is mostly not recognized by endocrinologists.
      However in the alternative medical field, and starting to be noticed by an increasing # of MD’s (a Dr at Northwestern has even begun doing research on it) believe that it does exist. It is believed that most people with Fibromyalgia and CFS actually have thyroid hormone resistance and when treated with T3 compounds that their pain and other symptoms go away. I use to be in constant pain everyday (tingling, shooting/stabbing nerve pain, and also muscle pain), sometimes so severe that all I could do was sit on the couch for weeks on end as it was so bad. Tylenol, advil, muscle relaxants, neurontin, etc did not touch the pain. The only thing that worked was a T3 compound. My 13 years of often debilitating pain went totally away on this compound. Interestingly, my tingling also decreased so much on the T3 compound that for the first time in 5+ years, I could feel my cats fur. Unfortunately I got a severe UTI, plus the flu (and was vitamin D deficient and had a tetnus shot 4 shot 4 months earlier) and then demyelinated again so I won’t know if the thyroid hormone would have helped me even more than it did.

      Cortisol (from adrenals) also plays a role in pain, but there are different methods for testing, some of which do not reflect a person’s actual quant thruout the day.

      If you’d like more info please PM or email me.